September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
Parental Post Traumatic Stress Disorder, or what I like to call Present Traumatic Stress Disorder. I use the word present, because often, in the childhood cancer world, there is nothing post about anything. It's all right here, right in front of our face, constantly in the present. Your own child struggling with the after-effects of chemo, a friend grieving for their child that died from the beast, a new family looking like their entire world just fell apartâ€¦because it did just fall apart. Parents don't just have PTSD, PTSD has them. It rules the roost, unfortunately. There is not a day that goes by that you don't think about the pain and suffering your child went through. Immediately after treatment, the fear is as acute as the fear during treatment. As the years go on you still have fear, it subsides, but it is always there.
There are many who think everything goes back to â€œnormalâ€ when treatment ends. Hey, he looks healthy! The color is back in his cheeks, he's smiling, the pep is back in his step! Wonderful, carry on, he survived! Oh how I wish that were the case. Here is what PTSD looks like for me.
PTSD is seeing neurology for a potential seizure disorder caused by intrathecal methotrexate; and seeing urology for nocturnal enuresis (bedwetting) caused by stress, anxiety and his own PTSD. It's seeing psychology to medicate him to help with the anxiety and fear and the separation issues he deals with dailyâ€¦and then laughing about that a little because we both take the same medication for PTSD. PTSD is feeling guilty for complaining because your child survived and so many other kids didn't, so you try not to complain, but you do because you're tired. PTSD is trying to explain to the non-childhood cancer world that you feel this strange sense of guilt that your child survived and other children didn't. It's very hard to comprehend cancer killing one child and not another. It screws with your mind.
PTSD is attempting to pick up all the pieces that shattered the day you were told your child had cancer, but some of those pieces are hard to find or just don't even exist anymore. PTSD is knowing statistics and medical terms that you could probably hold some sort of degree for, but unfortunately there isn't one out there. Trauma is when a doctor needs to go through your son's medical history and asks you a million questions. Those questions set off a snowball effect of tears and anger because you're tired of the sadness and frustration it triggers. It's stomping into a school meeting, advocating for your child because they have so many side effects from the chemo that sometimes it's hard to keep track.
PTSD is knowing what can happen if his cancer comes back. It's hearing about another child relapsing and then hiding in another room to cry for them, for yourself and for every family that ever has to hear someone tell them their child has cancer.
It's looking at your son while he's sleeping and wrapping your arms around him and being so damn grateful that you can see him, touch him, smell him and hear his voice every single day.
PTSD in the childhood cancer world is real and it's palpable. I am so grateful for the other families that we have met along the way that deal with the same or similar issues that we deal with. We have met many through PCFLV and their programing. PCFLV is a vital resource for many in our community. Please consider donating in the month of September so PCFLV can continue serving other families like mine.
-written by Pauline, Sam's mom (Sam is 8 years-old and in remission from Acute Lymphocyctic Leukemia after 3.5 years of treatment.)